"Australia was built on humanity and we all pay taxes to look after the least in our society, why are you exempting my daughter from that," Mr McChroan asks politicians campaigning for office.

Cystic Fibrosis Australia wants the subsidy to be an election issue and is calling on Prime Minister Kevin Rudd to call an out-of-session meeting of the expert Pharmaceutical Benefits Advisory Committee to reassess its decision.

A Facebook campaign is urging leaders of both major parties to commit to funding the drug that would cost taxpayers $60 million a year.

The PBAC meets just three times a year and it could be November or even March next year before the committee gets to reassess Kalydeco.

Mr McChroan says he has written to politicians on all sides of politics about the medicine but has not had a response from anyone.

"This election campaign is not about the issues that affect ordinary Australians," he says.

"Health has been sidetracked by red herrings like boat people," he said.

Royal Children's Hospital cystic fibrosis expert Professor Sarath Ranganathan - who supervised seven children taking part in a clinical trial of the drug - said it produced a dramatic response. It didn't cure the disease but "it is the first drug that is disease modifying''.

Kalydeco is reimbursed in England, Scotland, Republic of Ireland, Wales, France, Germany, Austria, the Netherlands, Norway, Northern Ireland and the United States of America.

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